My name is Gordon Darroch. My two sons have both been diagnosed with Autism Spectrum Disorder (ASD). This is a blog about raising autistic children: the highs and lows, the joys and agonies, the hopes and fears, the sheer bloody-fingernailed exasperation and the "Eureka!" moments that every breakthrough brings. I hope that through writing this blog I can in a small way improve my own and other people's understanding of this often bewildering condition.

Saturday, 20 October 2012

The hardest thing to say

Seven weeks ago Magteld was diagnosed with breast cancer. It
was a shock that ruptured the fabric of our family all over again. The first
examinations indicated a fibroademona, but she was given a hospital appointment just to
make sure. The day of diagnosis was my birthday. We would go to the
appointment, then head out for lunch to celebrate the lifting of the shroud of
fear from our shoulders.

And then two women we’d never seen before came into the
consultation room and delivered the devastating news. They were a cancer
surgeon and a breast care nurse, and the tumour was anything but benign. At
that moment the future disintegrated.

The surgeon warned us, among other things, to be wary of
people peddling miracle cures on the internet. We smiled wearily and explained
that we were already well aware of that pitfall because of the children’s
autism. Nevertheless, one of the first dilemmas we faced was how to break the
news to the children. There were books available on how to explain cancer to children
of various ages, but not ones with communication difficulties. How would we
know if the message had got through to them, and how would they respond?

When Magteld took to bed after the first round of
chemotherapy the boys seemed unaffected at first. As long as someone was making the sandwiches all was well. We put a huge emphasis on maintaining
as much of the old routine as possible. But this could only work up to a point.
Magteld had to cancel a trip to Hamleys one Saturday because she was too tired
to take the boys into town. We knew that if we couldn’t explain these
unscheduled setbacks properly, we would only be storing up more trouble for
ourselves.

I first tried explaining it to Adam as we walked to school.
I told him mummy was very sick and would sometimes be tired, but he could help
her by not disturbing her and doing things by himself like getting dressed for
school.

As the weeks went by he became more difficult and agitated.
His top lip went raw from his nervous habit of sucking it down into his mouth.
In turn I grew irritated with him for being disruptive while his mother was
lying in bed feeling wretched.

One morning he told Magteld not to bring him to school
because she was sore. A little detective work by her brought out the revelation
that he saw her as a different mummy. It was only then that I realised that he
was rebelling against the cancer rather than his parents. He hated the fact
that his mother was sick. He wanted her to be the strong person who was always
able to pick him up. And so every time one of us mentioned her illness he would
froth with anxiety. He was agitated and confused, like a fly trying to escape a
room through a shut window. She explained to him that she was very sick but was
taking medicine to get better. The change of emphasis, from illness to
recovery, began to settle him. It became the backbone of our discussions about
cancer.

With Euan acceptance was more gradual. I expected him to
understand that his mum was seriously ill, but how would he deal with it? His
school found some materials about cancer and I discovered a series of superhero
comics about serious diseases that tied in neatly with his Batman obsession.
But for a while he seemed to showed no interest in either the comics or his
mum’s state.

Euan often responds better to sensory clues than verbal
information, and so it proved here. The turning point came when Magteld’s hair
started to fall out. Every night when he came home from school he would her
take her hat off and rub her head. One night Euan came up to me one supper time
and said ‘Mum’s not well’. It was hard to hear from him, but it was also a good
sign that the message was filtering through.

The other day he asked her if her hair would come back when
she was better. Euan rarely asks questions, so I took his curiosity as a sign
that he was moving towards acceptance. Then he asked: ‘In April, when Mum’s
better, can we go to Hamleys?’ The aborted trip had gained a kind of totemic
status in his mind, a yardstick of his mother’s sickness. And perhaps
perversely, it became the conduit for reassurance: the cancer was no longer a
vast, shapeless threat that made his parents sad and angry, but the thing that
had stopped him going to the toy shop. The promise of a deferred visit once the
treatment was over reassured him on two fronts: he could concentrate on his mum
getting better, and the disruption to his routine had a measurable end-date.

Then came the final breakthrough. The next day Euan took out
his diary, where he plots the upcoming events in his life - birthdays, school
holidays and respite dates – turned to April 1 and wrote: ‘Mummy get better.’
And under the following Saturday he wrote: ‘Go to Hamleys’.

The hardest thing to say has not been that Mummy has cancer,
but that Mummy will take a long time to get better. Sickness in a child’s mind
is meant to be a fleeting thing. Slowly they are coming to understand that it’s
a process that will still be going on long after Christmas. It would, of
course, have been a different story if her cancer had been more advanced, but
those kinds of hypothetical worries are for adults, not children. The main
lesson I’ve learned in these first weeks has been not to add to their burden by
heaping all our adult fears about cancer on top of their own.

Euan asked me another question just before he opened his
diary: ‘In April, when Mummy’s better, will everybody be happy?’ Answering
that, I reckon, will involve a bit more fieldwork.

It's never going to be easy, but once again, children help us to understand things from a different perspective, and your children particularly. I am thinking of you and your wife, and admire the way you are sharing your experiences immensely.

Thanks for sharing your experience I feel for your family and admire your strength you ate an inspirational couple. This made tears well in my eyes as I have a cousin with autism and lost 2 aunts to this cancer and my gran is a survivor do your story touched me so beautiful. I hope tour wife is well on her way to recovery and the boys are adjusting well beta everyday with their understanding of what is goin on. It's great the Drs got the cancer early and it isn't worse type. I wish youre wife a full and speedy recovery and will think about you and pray for you. This article really puts things into perspective.

Being the dad of a 4year old with a moderate ASD diagnosis, I often look to your blog for ideas and advice. That you can still find the time to share these thoughts and experiences is remarkable. From what I read on your blog, your two wonderful sons have two wonderful parents and all four of you provide such inspiration to all of us who have a loved one growing up with autism. Thank you